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Asking for input
Posted: Monday, December 10, 2012 12:50 PM
Joined: 9/19/2012
Posts: 8

It's been a week since I was diagnosed with Frontotemporal Dementia. I haven't cried for more than a second, and even then only 2 or 3 times total. In that time I've been very calm and discussed the important things with those who matter. I told everyone who needs to be told and I've embraced life and done more hiking and living, and we moved, which kept me busy and confused me more. I've had such a great positive attitude, but last night I was angry as hell for hours. I wasn't angry at anything in particular, except maybe the diagnosis.


So I've got some big decisions to make and even though I've read a lot and talked to my husband, this seems overwhelming.


1. Even though I haven't been teaching or providing counseling since June, I wanted to return to work. I know I can't teach any longer, but how will I know if I can do some sort of job for a while? UCI told me to apply for disability. Is it really time now? My husband said it's probably time for me to retire and enjoy doing my own thing. I always love to work.


2. UCI also suggested I get a monitoring device since I'll be alone for long periods of time and we just mopved. I did get lost for brief times in my old town even though I had lived there for years. It only lasted 15 minutes or so each time. Is it necessary to get a monitoring device already?


3. I've read a lot of material on FTD. I don't have the behavior variant or the personality changes yet. Mine is more language, words, memories etc. I know no one knows this answer, because it is different with everyone. But some material says FTD patients don't usually live five years after diagnosis. I read something that said it was 10-12 years. How the heck do you decide prioorities when you just don't know?


Yes, I"m trying to figure it all out in one week and make decisions that can't be decided. It's how I used to be. I feel stuck in this in-between phase - I still have the thought provcess and ideas of the healthy version of me, with the memory loss, language problems of now, and some information. I wish I could hold onto the infiormation. I read it, try to make sense of it, and then it's gone before I can use it.



Posted: Monday, December 10, 2012 1:26 PM
Joined: 9/19/2012
Posts: 8

I expect I'm rushing this and trying to come at this problem like I would have with any problem ten years ago. (get the facts, research, analyze and solve with the best solution) But things are different now.


Okay, I'll slow down, let this diagnosis sinbk in a little more, I'll call the Alzheimer's Association or go in to the office and get more info. I can probably make these decisions with time, right?

Posted: Monday, December 10, 2012 2:03 PM
Joined: 12/18/2011
Posts: 3097

Even though you're saying you haven't had any personality changes, were you always a person who doesn't cry?  Or were you always someone who had periods of anger like you describe in your post?  If not, those are personality changes.  Usually a huge personality change that occurs is a flattening of affect, but in FTD much of the time it's anger.


Because of the FTD, your ability to judge whether you can work or not is impaired.  The responsibility of a job is also a stressor, which will further impair your functioning.  Go on disability or retire, whichever you wish.  If you wish to participate in some "working" activity, is there some volunteer work you could do in an area you are interested in (animal shelter, library, etc.)?


Every person experiences dementia differently and your life span is also affected by how fast or slow you progress, your general health and any future health challenges.  There would be no way to tell until you were much further along, by which time you will probably be living in the moment and not care too much about the future anyway. 

Iris L.
Posted: Monday, December 10, 2012 3:00 PM
Joined: 12/15/2011
Posts: 16574

TZ, Dayn2nite has excellent insight into your situation and gave you spot on advice. 

I'm still searching for the same answers after several years--twenty-five years after initial memory loss, ten years after the first significant decline, four years after joining these boards and beginning medication.

The main things I've learned, not in any order, are to get my legal and financial affairs in order, maintain safety, limit stress, keep a positive attitude, follow Best Practices, and continue to live my life!

My goal is to stay at this level or better and maintain my independence as long as possible.

I don't pay any attention to life expectancy predictions.  No one knows and it's futile and upsetting to obsess about it.

One advice I can give you that is very important is to take what you hear from the outside world with a grain of salt.  They don't know the dementia world and speak from guestimates, not from personal knowledge. 

Read the boards and learn about how others are handling their condition.  Peruse the Archives.  Seek support from members here and others who are knowledgeable and objective.

Life is different but life still can be good.  We have to create our own "moments of joy".

Iris L.


Posted: Tuesday, December 11, 2012 12:22 AM
Joined: 12/6/2011
Posts: 3326

Hi, TZ. Dayn2nite and Iris have given you good advice.  I know the feeling of getting a diagnosis and wanting to continue to work.  I was practicing law and receiving much fulfillment from it.  But when I had to leave, I found a new lease on life with all the extra time I had on my hands.  I did as you said you are going to do, go to your Alzheimer's Association Chapter.  I got very involved with my chapter and am getting much satisfaction from it.  It gives me a purpose and makes me feel like I'm doing my part towards finding a cure or something to stop the progression of these terrible diseases.

Mimi S.
Posted: Tuesday, December 11, 2012 10:04 AM
Joined: 11/29/2011
Posts: 7029

Myriam, How are you feeling?
TZ, Welcome to our world!  I am proud that you are facing your diagnosis without blinders and are telling people. You've gotten great advice. 
You've probably read more than i have about FTD. My take is that there are many different types. Maybe you don't have the type where anger is the main symptom. And that would be wonderful.
You might enjoy reading the fictional book: I'm Still Alice by Lisa Genova. She is diagnosed with regular Alzheimer's, but many parts of her story remind me of what's happening to you.
Have you heard about Best Practices?
If not Iris or I will write more.

Posted: Tuesday, December 11, 2012 11:20 AM
Joined: 9/19/2012
Posts: 8

Thanks everyone. Yes, you made a lot of points that I probably already heard and knew, but forget as I"m trying to think my way through this. LOL Thank you dayn2nite for so gently saying the obvious. The neuropsychologist said I do not have the behavior or personailty changes now, but after reading your comments, my husband and I talked and we're definitely paying close attention to see if it is there even a little. Pride is definitely getting in the way of me embracing the option of disability. I'll be 49 in two weeks, so retirement is not an option. You all gave great advice and support.


Mimi and Iris, I don't remember seeing the best practices. Can you please give me that information or point me in the direction to get it?


Thanks everyone.



Posted: Wednesday, December 12, 2012 8:46 AM
Joined: 12/18/2011
Posts: 3097

Teresa, maybe keeping a journal of your feelings and what's going on when you're having them will provide insight as to whether you are having personality changes or even what kinds of things trigger your anger.  I don't even have dementia and I can't remember how many emotions I've had in the past week, so writing things down will give you a record you can refer to - and it's therapeutic too.


I know your pride is keeping you from filing for disability, but I think of it more like you are caring for yourself by doing it.  You know having the stress of a job is likely to create more pressure (and possibly worsening) of the disease, so by going on disability you are helping yourself preserve the status quo.


Volunteering can provide a rewarding outlet for the need to work, and the Alzheimer's Association can always use volunteers.  If you do some work with your chapter, you'll also be building relationships with people who can assist you and your husband later on too.

Iris L.
Posted: Wednesday, December 12, 2012 11:48 AM
Joined: 12/15/2011
Posts: 16574

Re: feeling like still being able to work: 

TZ, I had to stop working abruptly on December 22, 1987.  I was 37.  I had only thought I would need to take a month-long break to recuperate from stress, and could get back to my pediatric practice.  I have never worked in pediatrics from that date.

Each time I went to the doctor he extended my short term disability.  In fact, I actually got worse as the months wore on.  Every time I had a doctor's visit, I hoped I would be able to go back to work. But I knew I could not handle the responsibilities of my work.

Even years later, after I began Exelon patch and Namenda and have learned all that I know about cognitive impairment and early stage dementia, I still think about practicing medicine again. It's still on my mind.  But in my next thought, I acknowledge that that is not a possiblitity.  I have to direct my desire to practice medicine into a different avenue.

What I'm trying to say is that you may ALWAYS have the desire to counsel people and to work.  Often people in advanced dementia try to go back to "work".  The rememberance and desire of work appears to remain in some patients.

Be aware of this aspect of dementia and try to find ways of working with it instead of fighting it.

As far as Best Practices go, these are lifestyle habits that have been proven to reduce risk factors of dementia, improve daily functioning, and possibly delay the onset of new symptoms.  The goal of treatment now is to prolong the early stages, in other words, maintain where you are and delay getting worse.

Best Practices include: 

--take medications as indicated 

--eat the Mediterranean diet, including antioxidants and omega-3 fats.  a small amount of wine is optional 

--exercise vigorously according to your capability 

--stimulate the brain with new learning and activities 

--continue to socialize 


Some members add aromatherapy, light therapy and other practices to their treatment programs.  There are many threads by Lane Simonian re: aromatherapy.

I would like to add good sleep, maintaining a positive attitude and a good emotional state, and avoiding stress are also part of treatment for a dementia patient. 

I credit these practices with giving me the improvement that I have had.  I include reading and participating in these message boards for encouragement and support. 

P.S. Did you read my post on "my cognitive miracle"?

Iris L. 

Posted: Friday, December 14, 2012 6:42 AM
Joined: 6/24/2012
Posts: 574

TZ wrote:

Thanks everyone. Yes, you made a lot of points that I probably already heard and knew, but forget as I"m trying to think my way through this. LOL Thank you dayn2nite for so gently saying the obvious. The neuropsychologist said I do not have the behavior or personailty changes now, but after reading your comments, my husband and I talked and we're definitely paying close attention to see if it is there even a little. Pride is definitely getting in the way of me embracing the option of disability. I'll be 49 in two weeks, so retirement is not an option. You all gave great advice and support.


Mimi and Iris, I don't remember seeing the best practices. Can you please give me that information or point me in the direction to get it?


Thanks everyone.



I was a teacher and I had decided to retire about 6 months before the diagnosis.  I suspected something, but had no real clue.

There are options for retirement vs. quitting.  If you have the definite diagnosis, you can get disability retirement which means that they pop your age to 55 and give you the same as if you were really 55.

If you pay social security where you live as a public employee, you can get the same but you have to go under review and it could take over 15 months, but eventually it should be approved.

Meaningful work is out there, I have been trying to find some myself.  But it is difficult.  I am currently working as a volunteer ombudsman for nursning homes.

Mood issues creep up on you and you don't realize it.  A journal is a great idea.  You can recognize patterns and acknowledge things that way.

Think of the moods as 'the enemy' and fight them off with everything that you have and especially helpful is exercise.  

Hope this helps.

Johanna C.
Posted: Saturday, December 15, 2012 9:20 AM
Joined: 12/9/2011
Posts: 11114

Hello TZ and a very warm welcome to you.  I am indeed sorry for what is happening.   You are a good advocate for yourself in looking for information and trying to plan ahead - that is a very good set of attributes to have under the circumstances.


I am an RN whose mother had a non-Pick's FTD variant and whose step-dad was diagnosed with Alzheimer's Disease, so I've been around the block and back again.


First, UCI is an excellent place to be.  They have quite a bit of support services for FTD patients.  They also have a support group for FTD family members and caregivers which is facilitated by a Social Worker from the Alzheimer's Assn.  If your husband does not attend,  this may be something to think about for future reference.  By the way; the support group facilitator comes out of the Alzheimer's Assn. office in Irvine and she is excellent at what she does, is on the cutting edge of FTD informatin and is available thru that office.  Unfortunately, I cannot remember her name, but you can probably find it thru UCI.


One major thing to share is that with FTD, one usually loses the good understanding of self and limitations.  Judgment and reasoning become compromised - intially in a low manner, but as time moves on this often becomes a huge problem.  FTD persons most often develop little to no insight regarding themselves,  their behaviors or their limitations.  So, in this frame of reference, it is good to listen to those around you if you can do so.


Delusions (rigid false beliefs) are often an issue and having these issues pointed out or explained away by others is not usually accepted by the patient, so this will be a challenge for your family.


In this light, it is best to get all the legal documents and financial planning in place right now.  Durable Powers of Attorney for Healthcare AND Finance; HIPAA Waiver to enable loved ones (LOs) to be abe to speak to your doctors and any psych support  as necessary to avoid problems in the future.  Getting a LO on all financial accounts is also important.  Always stick with a dementia expert to manage your FTD - our primary MDs are wonderful with so many things, but they are not dementia experts and FTD is a complex disease process. 


Sitting down and deciding what to do for future planning under different circumstances as the disease progresses is a good idea and perhaps can be done with social work assistance.  


 I can certainly understand your becoming angry - being in this cirumstance and receiving such a diagnosis would indeed bring feelings of both grief and anger.  Anger can indeed become a hallmark of FTD in many instances and if this becomes an ongoing issue, then it is something to bring to your dementia expert as soon as possible.


There is no certainty for length of life with FTD - some folks go on for a very long time, others have a shorter duration.  I would make all plans for contingencies for different levels of care and just keep on keeping on.  You are still you and you have much good life in front of you.


One thing I would not do would be to try to continue working at this point.  This is not sustainable and would not serve  you well with the challenges you have so eloquently expressed in your profile.  Especially after reading your profile information - one more reminder -  remember; judgment becomes compromised.  You could however, be very  effective at volunteering either in the educational setting (as long as your capabilities are not compromised) and also with the local Alzheimer's Assn. or with programs at UCI.


At this point, I would question your continuing to drive and I would speak openly with the dementia expert as well as family about this.


You have found a very supportive place and your husband and other family members are also welcome to come here to the Caregivers Forum and/or Spousal Forum - there is SO much support for family members and that is just as important as the support for the dementia patient.


There is also a 24 Hour Helpline for assistance for patients and family and one can even ask to speak to a Care Consulant thru this number.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  There is no fee for this service.  The number is; (800) 272-3900.


Please do keep in touch, we care very much and we will be thinking of you.


Johanna C.